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Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

  • Lori Wiener (a1), Abby R. Rosenberg (a2), Wendy G. Lichtenthal (a3), Julia Tager (a1) and Meaghann S. Weaver (a4)...



The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.


Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.


The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Significance of results

Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.


Corresponding author

Author for correspondence: Lori Wiener, Ph.D., Center for Cancer Research, National Cancer Institute, Building 10- Hatfield CRC Room 1-6466, Bethesda, MD 20892. E-mail:


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Cancer in Children and Adolescents (2014) National Cancer Institute. Available from
Chau, NG, Zimmerman, C, Ma, C, et al. (2009) Bereavement practices of physicians in oncology and palliative care. Archives of Internal Medicine 169(10), 963971.
Contro, N, Larson, J, Scofield, S, et al. (2002) Family perspectives on the quality of pediatric palliative care. Archives of Pediatrics & Adolescent Medicine 156, 1419.
Croney, T and Clark, K (2015). Palliative care certification: New and revised standards overview and review process. Available from
D'Agostino, NM, Berlin-Romalis, D, Jovcevska, V, et al. (2008) Bereaved parents’ perspectives on their needs. Palliative and Support Care 6, 3341.
deCinque, N, Monterosso, L, Dadd, G, et al. (2006) Bereavement support for families following the death of a child from cancer: Experience of bereaved parents. Journal of Psychosocial Oncology 24, 6583.
deJong-Berg, MA and Kane, L (2006) Bereavement care for families part 2: Evaluation of a paediatric follow-up programme. International Journal of Palliative Nursing 12, 484494.
Dillman, D, Smyth, J, and Christian, L (2009) Internet, mail, and mixed-mode surveys: The tailored design method, 3rd ed. Hoboken, NJ: John Wiley & Sons, Inc.
Granek, L, Barrera, M, Scheinemann, K, et al. (2015) When a child dies: Pediatric oncologists’ follow-up practices with families after the death of their child. Psycho-Oncology 24, 16261631.
Granek, L, Mazzotta, P, Tozer, R, et al. (2013) Oncologists’ protocol and coping strategies in dealing with patient loss. Death Studies 37(10), 937952.
Heller, K and Solomon, M (2005) Continuity of care and caring: What matters most to parents of children with life-threatening conditions. Journal of Pediatric Nursing 20, 335346.
Jensen, J, Weng, C, and Spraker-Perlman, HL (2017) A Provider-based survey to assess bereavement care knowledge, attitudes, and practices in pediatric oncologists. Journal of Palliative Medicine 20(3), 266272.
Kearney, J (2017) Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions. Psycho-Oncology 26(S1), 5.
Kutner, JS (2009) Bereavement: Addressing challenges faced by advanced cancer patients, their cargivers. Primary Care 36, 825844.
Lichtenthal, WG (2011) Using mixed methods data to adapt meaning centered psychotherapy for bereaved parents and breast cancer survivors. Psycho-Oncology 20(Suppl. 20), 15.
Lichtenthal, WG, Corner, GW, Sweeney, CR, et al. (2015) Mental health services for parents who lost a child to cancer: If we build them, will they come? Journal of Clinical Oncology 33(20), 22462253.
Macdonald, ME, Liben, S, Carnevale, FA, et al. (2005) Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child's death. Pediatrics 116, 884890.
Roberts, K, Holland, J, Prigerson, HG, et al. (2017) Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback. Palliative and Supportive Care 15, 5766.
Rosenberg, A, Baker, K, Syrjala, K, et al. (2012) Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatric Blood and Cancer 58, 503512.
Snaman, JM, Kaye, EC, Cunningham, MJ, et al. (2017) Going straight to the source: A pilot study of bereaved parent-facilitated communication training for pediatric subspecialty fellows. Pediatric Blood and Cancer 64(1), 156162.
Snaman, JM, Kaye, EC, Torres, C, et al. (2016) Helping parents live with the hole in their heart: The role of healthcare providers and institutions in the bereaved parents’ grief journeys. Cancer 122(17), 27572765.
Sullivan, R, Kowalczyk, JR, Agarwal, B, et al. (2013) New policies to address the global burden of childhood cancers. The Lancet Oncology 14:3, e125e135.
Wiener, L, Kazak, AE, Noll, RB, et al. (2015) Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood and Cancer 62(S5), S419S424.



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